Divya Shankar, MD

Pulmonary fibrosis (PF) is a group of interstitial lung diseases (ILDs) that cause scarring of the lungs, deteriorating lung function, and death. Racial and ethnic minority individuals with PF experience health deterioration and death at younger ages than non-minority counterparts. It is possible that delays and disparities in care along the pathway from the first signs of disease to diagnosis to treatment contribute to the racial and ethnic disparities that lead to worse outcomes. We will map the steps in the full pathway of PF care to assess care points where disparities increase. We will also assess provider perspectives along the spectrum of care (primary care to specialist care) in order to understand challenges to care progression and points of care where providers would be open to interventions addressing inequities in PF care. The results of this project will inform a future intervention to promote equity of care for racial and ethnic minority individuals with PF.

Update: Over the past year, I have leveraged data from TriNetX, a large national electronic health record registry, to study care pathways among patients with pulmonary fibrosis (PF). I assembled a cohort of approximately 8,000 PF patients across nearly 50 hospitals and conducted early analyses to evaluate how care is delivered. Initial findings reveal overall low use of palliative and supportive therapies for patients with idiopathic pulmonary fibrosis (IPF), and non-white and/or Hispanic patients were noted to be significantly less likely to receive palliative care, engage in advance care planning, or receive symptom-focused treatment. Additionally, there was marked institutional variation, with substantial differences between hospitals in the use of these critical services. The next phase of this work involves mapping the care pathways that PF patients follow on their way to treatment, with a focus on identifying disparities along each step of the journey. Insights from this analysis will inform the upcoming phase of provider interviews, aimed at better understanding barriers to equitable PF care.